Mother is slowly suffocating to death after contracting one of the world's rarest lung conditions
Mother was diagnosed with rare disease just after her second child was born
13:28 GMT, 28 June 2012
Sally struggles to keep up with her two children, who are now 11 and 13 years old
A mother is slowly suffocating to death after contracting one of the world’s rarest lung conditions.
Former nurse Sally Carver, 49, has already survived longer than expected with the lung condition lymphangioleiomyomatosis (LAM). In 2001 doctors said she had just 10 years to live.
She is one of only about 75 women in the UK known to have LAM, which causes smooth muscle cells to grow uncontrollably until they invade the airways, blood and lymph vessel in the lungs.
The accumulation of LAM cells form clusters and cysts, which destroy healthy tissue and create holes in the lungs, making it a struggle to breathe.
There is no cure for the disease, which only affects women. A few patients still have moderately preserved lung function after 20
years whilst others are less fortunate and deteriorate rapidly.
Sally, a mother-of-two, said when she was first diagnosed there was not even treatment to help alleviate the pain.
The mother from Waverton, Chester, said: 'I was diagnosed just after my second child was born. Its worse when you’re pregnant.
'I was having trouble breathing and had continuous pains in my chest. I would be out of breath just climbing the stairs.'
She added the disease, which often gets misdiagnosed as asthma, has made her life difficult as she had to give up her job and struggle to keep up with her two children, who are now 11 and 13 years old.
'It limits what I can do, such as participating in activities with the children. I am slowly suffocating,' she said.
'The hardest thing was when I was given 10 years to live, so I quit my job as a nurse to spend time with the boys and make the most of things.
'It was hard knowing this disease only gets worse until you need a lung transplant. Quite a few people I know have died waiting for a lung transplant.'
Sally is one of only about 75 women in the UK known to have LAM
This scan shows the affect of lymphangioleiomyomatosis on the lungs of a different female patient
Sally was approached in 2005 and asked if she wanted to trial a new treatment, a drug called rapamycin.
She is now the longest patient in the world to be taking the drug,
and her condition has become stable.
'It slows the progression of the disease,' she said.
'It cannot cure it but it has slowed down my deterioration. There are only a handful of people in the UK who are on this treatment. Fortunately it has helped me live longer than was predicted.'
According to charity LAM Action, the long-term prognosis is difficult to predict for each patient because the condition is so rare.
For more information visit www.lamaction.org